Cross Party Group in the Scottish Parliament on Palliative Care

COPD & Palliative Care

The British Lung Foundation Scotland

• Information • Support • Campaigning • Research

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

What is COPD? • Chronic obstructive pulmonary disease (COPD) is a disease state characterised by airflow limitation that is not fully reversible. The airflow limitation is usually both progressive and associated with an abnormal inflammatory response of the lungs to noxious particles or gases.

Causes of COPD • • • •

80% + smoking related Occupational Environmental Genetic

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

Prevalence of COPD Percent Change in Age-Adjusted Death Rates, U.S., 1965-1998 Coronary Heart Disease

–59%

Stroke

–64%

Other CVD

–35%

COPD

All Other Causes

+163%

–7%

Source: Source: NHLBI/NIH/DHHS NHLBI/NIH/DHHS

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10 Most common causes of death (Scotland) 2003-2005

10

8

6

(%)

4

2

C hr on ic

Ac ut e

m yo ca rd ia li nf ar is M ct ch al io ae ig n na m i nt c he ne a o r pl O td as th is er m ea ch of se ro br ni o nc c ob hu st s ru an ct d iv lu e ng pu lm P ne St on ro um ar ke y on di ,n ia se ot ,o as sp rg e ec an ifi i s ed m as un s ha pe em ci fi e or d rh ag e or in fa rc U tio Se ns n pe qu ci el fie ae d of de ce m re en br tia ov as cu M M l a al al rd ig ig is na na ea nt nt se ne ne op op la l a sm sm w of ith br ou ea ts st pe ci fic at io n of si te

0

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

Prevalence & mortality of COPD in Scotland •Primary care data suggests over 90,000 people living with COPD in Scotland Male

COPD - PTI Contacts

Female

140,000 120,000 100,000 80,000 60,000 40,000 20,000 0 2003/04

2004/05

Prevalence by healthboard 04/05

COPD - Prevalence per 1000

05/06

30 25 20 15 10 5 0

Scotland

Western Isles

Tayside

Shetland

Orkney

Lothian

Lanarkshire

Highland

Greater Glasgow

Grampian

Forth Valley

Fife

Dumfries & Galloway

Borders

Ayrshire & Arran

Argyll & Clyde

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

Prevalence & Mortality of COPD in Scotland? • Primary care data suggests over 90,000 people living with COPD in Scotland

Number of deaths

4 ,6 0 0 4 ,4 0 0 4 ,2 0 0 4 ,0 0 0 3 ,8 0 0 3 ,6 0 0 1997

1998

1999

2000

2001

Epidemiology of COPD New cases in 2001

1000 800 600 400 200 80 -8 4

-7 4 70

-6 4 60

-5 4 50

40 -4 4

30 -3 4

20 -2 4

10 -1 4

0-

4

0

Age band

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

Who is living with and dying from COPD Hospital use by Deprivation Category

Dep Cat

Episodes

1 (affluent) 2 3 4 5 6 7 (deprived) All

per 10,000 people

563 1,697 2,951 4,031 3,004 2,446 2,509

19 24 27 32 40 45 74

17,201

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The Changing Political Context

• • • •

Not a national priority Developing clinical standards Recognition of the needs of patients Awareness that we need to do “something” about non-malignant palliative care

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

The real burden of disease • • • • •

Isolation and depression Fear and anxiety Low expectations Quality of life Access to services

What are the palliative care needs of patients with CLD? Chronic Lung Disease

94% 77% 59% 47% 68% 44% 65% 71%

Symptom Burden Dyspnoea Pain Cough Sickness Anorexia Constipation Insomnia Low Mood

Lung Cancer

78% 85% 56% 46% 76% 59% 60% 68%

Edmonds, Pall Med 2001;15:287-285

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

What are the palliative care needs of patients with CLD? COPD vs Lung Cancer; quality of life • Anxiety/Depression levels higher • Quality of life poorer including pain • Information needs not met both groups • Social support lacking for both in community • Specialist palliative care lung cancer only • COPD intermittent support from respiratory nurse

Gore Thorax 2000 ; 55: 1000-6

Why do we find palliative care for respiratory patients so difficult?

• • • • •

Terminal phase difficult to define Many near death episodes Palliative Care is for cancer patients only Palliative care is only for the dying Very low patient expectations

Wednesday 5 March 2008

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Cross Party Group in the Scottish Parliament on Palliative Care

Results for patients LC

patients knew they were dying

LC

more likely to die in a hospice

CLD

die in hospital

CLD

often die within 24hrs of admission

CLD

needed more help with self care

LC

more community nurse & palliative Care

Edmonds et al Pall Med 2001;15 287-295

What patients do NOT want to hear • Its too difficult • We’ll get “swamped” • Their journey is wrong

What patients want to hear • The same as…………………………….

Wednesday 5 March 2008

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